Monday, 9 November 2015

The ‘stages’ of dementia

I had
a very refreshing conversation recently with someone running a care company
about the 'stages' of dementia. In this person's view, the way in which the
medical model defines dementia by different stages isn't helpful for a more
human understanding of what dementia really is and how it progresses.
Unsurprisingly, I agreed.The
stages of dementia are generally defined as follows:Mild/Early Stage: Characterised by the
onset of a range of dementia symptoms – these could be anything from memory
loss to confusion. I describe some common dementia symptoms in my blog post
‘What is dementia’. This is generally considered to be the stage at
which dementia should be diagnosed.Moderate/Mid Stage: Symptoms experienced in
the mild/early stage are increasingly severe, and changes in behaviour can become more
marked and difficult to cope with, both for the person with dementia and those
caring for them. If a person is diagnosed at this stage, it’s considered by
many medics to be a late diagnosis.

Severe/End Stage: This stage is characterised
by further deterioration of previous symptoms, but is particularly marked by
physical frailty – for example the person may become immobile, incontinent, have
swallowing problems, experience weight loss, be at an increased risk of
infections, and have severely limited or non-existent verbal communication.I've
actually never been a fan of compartmentalising, which is how I see the concept
of stages in dementia. For me it's fraught with problems for the following
reasons:

No
two people experience dementia in the same way, even if they are diagnosed with
the same type of dementia (and there are over 100 different types of dementia).

Dementia
is notorious for giving a person good days and bad days, so in the staging
model a person could appear to be mid stage one day and more early stage the
next day, making staging very unreliable as a concept. This is even more applicable if the person has other conditions, alongside their dementia, which can fluctuate.

Severe/end
stage dementia is often confused with end-of-life, which would be encapsulated
within it, but in reality a person could fit into the severe/end stage category
for far longer than a few days, weeks or months. Technically my dad would have
been severe/end stage for at least 6 years, but in the earlier part of those 6
years his dementia manifested itself in a way that meant he bordered both
moderate/mid stage and severe/end stage. This only serves to further highlight
the shortcomings of viewing dementia through a rigid staging model.

What
is immediately obvious to me is that given the complexity of dementia, referring
to stages has the ability to drastically mislead care professionals and
families, and could, at worst, affect decisions about care and support that may
adversely impact upon the person with dementia. The concept of stages also
encourages comparisons to be made about people who technically fit into the
same stage, but are in fact completely different in how they are experiencing
their dementia and reacting to it, which can only make the minefield of care
and support more baffling.Looking
at dementia through the prism of stages destroys concepts like individuality
and being person-centred, because it assumes all people who are living with
dementia are one homogenous group, which they most definitely are not. I also
feel staging has the ability to affect whether a person receives positive care
and support throughout their life with dementia – for example, would an
individual considered to be in severe/end stage dementia be offered as many
positive care and support options as a person in 'moderate/mid stage' dementia?
They certainly should be, but I suspect that the association of end-of-life with severe/end stage dementia might restrict more positive
care and support because the person is seen as being less in need now that they
are coming to the end of their life (which as I've already pointed out in my
dad's case, can be far from true).Staging
also has the ability to dampen hope, which concerns me greatly. When I talk
about hope, I’m not talking about notions of a cure for dementia tomorrow, or
unrealistic expectations for a person's recovery from having significant
symptoms of dementia to being back to their pre-diagnosis self. Hope, for me,
is about giving families and professionals the drive and determination to make
the life of the person with dementia happy, fulfilled and reflective of
everything that person enjoys, with a massive emphasis on living in the moment
and enjoying the good days.Mentally
that is difficult to align with the stages of dementia, because again, the
concepts associated with progressing from one stage to another are inevitably
likely to cause those around the person to lose a little hope, perhaps feel
deflated, blame themselves for not doing more to keep that person at the
previous stage for longer, and enhance the feelings of loss that are very
common for families and family carers.Given
the negative connotations regarding the stages of dementia, it’s all the more
unsettling that many families I’ve known, both personally and professionally,
have been encouraged to become very focused on the stages of dementia, when in
reality the juncture that their loved one has reached with their dementia at
any given time isn’t what is important. Encouraging families to focus on what
is possible, what their loved one can do, and how they can provide optimum care
and support is far more helpful.Perhaps
even more worryingly, I’ve known medical staff who use the staging model to
justify recommendations or decisions about care that families can often feel
compelled to agree with because they’re being told that their loved one has
reached a certain stage of their dementia. When my dad was immobile,
incontinent and living with dysphagia (swallowing problems – more information
here), we met doctors who questioned his quality of life and predicted
his imminent demise due to his end stage dementia. Without a family to advocate
for what he could do and did enjoy, he would have been compartmentalised in a
way that effectively wrote him off as a human being.I’m
not in any way seeking to deny that dementia is characterised by deterioration
and is terminal, but I also strongly feel that an antidote to the concept of
staging is long overdue. For me, this would simply be:See each person with dementia as an
individual in their own right, and if you must assess them, assess them in the
context of the moment in time when you are assessing them, keeping a completely
open mind as to what the rest of that day, week, month or year might bring for
that person. More than anything the person with dementia needs appropriate care
and support, not a misleading label.Or to put it another way, in the
words of Helga Rohra, a lady living with dementia:“The faces of dementia, rather than
the stages of dementia.”

2 comments:

Great writing & hits the spot exactly. My mum doesn't fit the stages model & as I describe it as having good days & bad days. The difference in the 2 type of days is huge. Thanks and your blog is inspirational for carers like me.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.